Chris's First 5K

Today we participated in the 5K run/walk for hearing, Hear We Come, at A.I. DuPont Hospital for Children.  Emma is part of the cochlear implant program there and Chris thought this would be a fine time to start running.  He trained a bit for the 5K, but in all honestly he could pretty much run the distance without much training as he is pretty fit.  His goal was to finish without walking at all and he met that goal while keeping just under a 10min/mile pace.  The course was beautiful and did contain a couple of hills, so that explains why his pace was a bit slower than his typical pace at the flat as a pancake course he used to train.  Congratulations Chris! 

Julia participated in the Kiddie K at the beginning of the day and had a ball running with all the kids.  The day started out cold and rainy, so I had dressed the girls for that weather but by the time the race started it was a gorgeous sunny day.  I'll have to remember to bring some t-shirts and shorts as a back-up for the next race day.

Our good friend, Mrs. B, helped me walk with the girls while Chris went with the runners.  The turnout for the 1st Annual event was amazing and we all had a lot of fun.  Chris is now looking forward to signing up for his next race.  Now that he knows what to expect, he's trying to beat his time and has the goal to complete the 10mile Broad Street run.  

Horse Therapy

We've been looking at therapeutic riding and hippotherapy programs (i.e., horse therapy) for Emma for the past couple of months as a fun way for Emma to work on getting better neck and trunk control.  We discussed starting this therapy with Emma's doctors and they all agreed that Emma could benefit tremendously from a program and so we set out to find a program that fits our family style.  We were lucky to have several programs in our area to choose from and found one that fits us perfectly! 

The initial goals we set with our therapeutic riding team are:

1.)  Improve Emma's neck control - have Emma hold her head up mid-line for extended periods of time

2.)  Improve Emma's trunk control - have Emma ride the horse in various positions

3.)  Improve Emma's vocalization - have Emma *talk* to the horse to get him to move

We expect that these goals will take a while to achieve and that Emma will be riding horses long into the future with the first therapy session starting today.  I was so excited for Emma to start a "fun" therapy and thought Emma would be equally as excited to ride a horse.  After all, Emma loves Finnegan, our 90+ lb. labrador retriever that she often straddles like a horse so I thought she would be thrilled to take a spin on Dunkin the pony.  Boy was I wrong!  

Although Emma was all smiles while in the stroller looking up at Dunkin, once we put Emma on him she started to scream and throw her back into an arch to try and get out of the activity.  I wasn't sure if she was screaming because she was scared of the horse or that her 4 person entourage were strangers to her with Mommy looking from the sidelines, but I quickly gathered that it was pure temper.  There wasn't a tear in her eyes for the entire session even though she screamed for 99.9% of it!  The director of the program told me that many children cry in the beginning and that after several weeks they start to look forward to the riding lessons.  I'm pretty sure Emma will come around to finding it fun and I hope it's soon since she will be riding every Friday evening for the foreseeable future.  I just won't tell her that Julia offered to ride Dunkin for Emma since she never cries when on a pony.......I have a feeling she'll be asking for riding lessons alongside Emma really soon.

Here is a short video of Emma riding inside the stables (before her screaming really started in full swing) before we went outside for some fresh air.  Even being outside didn't slow Emma's screaming down, which just amazed me since she is usually all smiles when outdoors.  It did result in a very quiet ride home since she promptly fell asleep from all the exertion screaming.  Let's hope that helps her sleep through until the morning! 

Two Ears to Hear!

Chris and I have been spending a lot of time at doctor appointments for Emma.  We are trying to get her a second CI while she is still young, her brain is plastic, and will get the most benefit from it.  Our reasoning is we plan for her to have both ears hearing with a CI, so why not get the second one sooner rather than later.  Now that we've become better at keeping one CI on her head, we feel we are ready to take the plunge to get the second.  The thing about CIs, though, is that two is not necessarily standard.  There are a team of people that determine if Emma is a candidate or not.  We've met with Emma's surgeons and found out that the team has agreed to a second CI for Emma!  She'll have two ears to hear!  We'll get a surgery date after insurance is approved and the surgeons have settled on their schedule for the summer.  I'm sure Emma isn't anxiously anticipating the surgery as much as we are, which means she isn't possibly as nervous as we are about another surgery.  The fact that she is still too young to understand is quite nice in that we don't have to worry too much about her anxiety over the surgery.

The second CI will give Emma better hearing in noisy environments (i.e., school, parties, outdoors, anywhere other kids are!, etc.), should help her to acquire language easier,  will help her localize sound better, and give her a back-up should one CI fail.  The second CI will also come with more equipment to maintain, a bit higher risk of meningitis since there are two pathways to her brain (she does have her vaccination up to date), another surgery, and the reality that we are not *saving* an ear for future technology.  We've talked to several parents and children who are bilateral CI users and they say if they could do it over they would implant the second ear sooner.  We have not heard any regrets.  And, let's face it, Emma has her fair share of challenges so anything that could make her communication easier is a good thing.  

We have been very happy with Emma's progress with her CI so far.  She is lagging behind others that are deaf without other challenges from the blogs I've sampled.  I've decided to stop sampling them, though, as it doesn't do us much good.  She makes many vowel sounds and says some consonants and is starting to look towards the proper toy when the associated sound is made.  This is GREAT progress for her.  

That said, I'm a little concerned lately about her responsiveness to sound.  She used to be spot on when we called her name or made noise and she would turn to it.  Lately, she is showing less of a response and I'm wondering if she is hearing us or if it is just a 19 month old tuning us out.  It's hard to tell with Emma as her motor skills make it difficult to "condition" her where she would drop blocks or do some other activity when she hears sounds.  We go mostly on her facial expressions.  Our AV therapist and Audiologist are going to discuss this recent set of events and determine how we want to proceed forward.  One options is to check Emma's last map to see if the response is the same as previously.  This would be easy since we have a spare set of equipment that we can swap out and test it while still maintaing her existing maps.  I am going to keep good notes on Emma's responses to sound to see if we can get a bit more insight into this.  If anyone out there has any suggestions for me on this recent challenge, please share a comment.  I'm open to ideas!

New look

I've been playing around with my blog a bit and wanted to give it an updated look.  I downloaded this template from Blogger Buster and find that it is mostly working for me but I have to get acquainted with how to customize it.  Expect a bit more tweaking to happen over the next week or so.  

That's it for this post.  A lot is happening here and I should have some good news to post in a few days, so check back later.

Mom of the Year!

I was just informed I received the Mother of the Year award.  Click here to see the announcement. I'm so honored, I'm speechless. 

Milestones

Great things have been happening with us lately!  Here are just a few celebrations we've had in the last couple of weeks:

• Emma is working so hard at sitting.  We dusted off her Bumbo this week and were so impressed with how good she sat up and then amazed to see her reach and play with a toy while in sitting position.  This is something I've been wanting for so long.  This will open up a whole world of play to my little girl!
  
• Julia now wears her big girl panties to bed!  This happened about three weeks ago and she's had only two accidents.  Way to go, Julia!  
  
• Emma has been getting more and more vocal (except during her AV sessions, but that's another story!) and said "up" this week!
• Emma grabbed two dominoes and knocked them together just to hear the sound!  It's huge for her to hold items in each hand and then to knock them together - for the sound! - well, we're over the moon proud of her!
• Julia and Me-mom made brownies the other day and I was eating one and Emma kept giving me an evil eye for not sharing.  So, I put it to her mouth and she took a teeny bite and gave a HUGE grin.  She demanded more and so I broke off little bits to give to her so she wouldn't choke.  She loved it.  It was so nice to see her interested in solid food.  Seems like she has Daddy's sweet tooth.
• Julia loves playing with the whiffle ball.  She can even hit the ball when we pitch it to her, time after time.  It's amazing to see her go.  Chris bought her a tee ball stand and she loves playing with it.  I think we have a future tee ball player in the making.

Questions, questions

For the last few months Julia has been making comments that tells me she knows Emma is delayed in her milestones. We've always tried to answer Julia's questions or comments as simply and honestly as possible.

The most recent comment came this week when Julia was commenting on the size of Emma's feet. "Emma's feet are so tiny, Mommy." I told her that yes, they are tiny compared to Julia's feet, but she has a new pair of shoes since they did just grow. We moved on to other conversations, but Julia kept coming back to the conversation around Emma's tiny feet. Finally, she got very thoughtful and said, "When Emma's feet grow she'll be able to walk because they won't be so tiny anymore." So, that was behind the conversation! Emma's not walking yet. I explained to Julia that Emma is not walking yet but it isn't because the size of her feet. It's because her muscles don't work so well. She seemed to understand that and said she wanted to help Emma make her muscles stronger like her and Daddy (I guess Mommy just isn't that strong!). I told her that Emma would like that.

I'm sure there will be more questions to come, but for now it's nice to know that Julia isn't afraid to ask questions or make comments on Emma's progress. And, it's nice to see Julia celebrate as much as me and Chris over all the little milestones that Emma is making on her own time. Of course, Chris and I continue to make a huge deal over Julia's milestones, too, so maybe she has us as role models in showing our enthusiasm :-)

Join me in a 5K Walk for Hearing

A.I. duPont Hospital for Children is hosting the 1st Annual Hear We Go 5K Run/Walk on the hospital grounds to benefit clinical and research programs related to hearing loss and hearing conservation in children. Cost is $16 if you pre-register by May 28th, $20 after May 28th. You can register online here.

There is also a Kid's Kiddie K free to kid's 10 and under with registered participant. Refreshments, activities, raffle and education fair will also happen.

Date is Sunday, May 31 at 10am.

Chris is running this event and me and the girls are walking.  We'd love to have you join us for this cause.  Thanks to wonderful advances in technology, Emma has been "hearing" for 4 months now with her cochlear implant she received at A.I. DuPont - what a miracle!

P.S.  If you can't make the walk and want to give a contribution, they are welcome, too!